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LESLIESPEAKMAN's Photo LESLIESPEAKMAN SparkPoints: (2,119)
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3/29/12 8:33 P

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Well what I hate is those people that judge you based on the fact that I give my daughter medication. My oldest child has many medical issues that needs medication. It really irritates me how people get about it. Also those people that thinks I'm trying to milk the system because I haven't been working. Or that I am not using my degree like I should. When it's hard to take care of these two with all the doctors appointments that I have with them and including myself. It's so frustrating having to tell people. From now on if they don't get it I'm just going to have to tell them to mind their own business and get a life! That is all I can do for now.

I'm going to get back to me and do more exercising. Yup!

Leslie Speakman

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ANDILH Posts: 1,243
2/6/12 11:06 A

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I was talking with someone about how people seem so uncaring and she suggested something I hadn't thought of. What if what we're taking as uncaring really is uncaring, but uncaring how themselves and not for others? Like you mentioned the guidance counselor was flip about dealing with the bank. Maybe she's that flip with her own finances and doesn't care how things end up for her.
My sister (Ricka) sleeps with either me or own mom every night because she does have so many seizures while she's sleeping. It makes for distracting sleepless nights, but she's safe so we've been doing this for 10 years because we can't stand the idea of someone coming in just to watch her sleep.

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2/5/12 9:57 P

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It does seem like that sometimes. I know I was saying one day how tight money is with my hubby and the guidance counsellor at the school I work in was so flip with a well just call the bank and tell them what's wrong. Yay cuz that only works for a time or two and then they don't care.It bugged me that she seemed so uncaring.
We are fortunate that Dwayne doesn't have that many seizures but when they happend before the VNS they were almost always life threatening and would go on for hours before they would get them stopped and would involve a few days in ICU in a hsopital an hour away. They used to start at night so I'm not sleeping well right now whic is making me a little irritable.
Hopefully he will get his tests soon and we can get some answers.
Thanks for your support ladies.

Karen

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ANDILH Posts: 1,243
2/5/12 9:14 P

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Unexpected seizures can be scary. My sister has between 7-35 a day, all different types so we never know when they're coming. People see her and she's always sweet in public with other people. But when we're home she's not always like that. Everyone assumes that she's this sweet cute person.
I don't think anyone on the outside really understands how hard things really are. I don't think people want to know because if they knew how much work was really involved then they might have to help (at least that's how it seems to me). People can see what they want to see and don't think much beyond that.

LESLIESPEAKMAN's Photo LESLIESPEAKMAN SparkPoints: (2,119)
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2/5/12 1:51 P

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I think it is puberty. My oldest daughter that happened to her and then same thing with my cousins son also. So, I believe that could be what it is. I hope everything goes will with you guys. I understand all of the stress. Things will get better you just have to keep pushing to find ways to make it better. Do some reading and super focusing and some investigating. It will all help.

Leslie Speakman

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JUNEGIRL2's Photo JUNEGIRL2 SparkPoints: (64,587)
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2/5/12 12:50 P

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Thanks Leslie, I think I am just going through a rough patch, usually I can just ignore it. Hubby is still on reduced work hours because of surgery in June, money is tight, he's frustrated, you know how it goes. Plus Dwayne had a Grand Mal seizure at school about 2 weeks ago and had to be rushed to hospital. First time in 8 years he's had one of those and it brought up alot of ghosts for me. We have almost lost him a few times to seizures but luckily since he had the VNS impanted, he has done well. This marks 4 seizures since mid October which is alot for him. Implant can't be turned up until he grows more, at the top level of his drug for same reason so now waiting to go for tests to see if something has changed, or it is puberty.
I think I will be talking to my Dr about taking a stress leave from work for a week or so, just so I can get rebalanced.He did this a couple of times last year for me when Brian was laid up and I just got overwhelmed. Since you can't take a stress leave from your family, a rest from work helps....
Hope things are going better for you.

Karen

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LESLIESPEAKMAN's Photo LESLIESPEAKMAN SparkPoints: (2,119)
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2/5/12 12:10 P

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I totally understand what you mean. I have problems with my daughter and everyone seeing that she could do more. It is really hard to get her to get her work done. And when it comes to getting stuff done for her I have issues with other people butting in and saying things that hurts her. I just can't get over it. So, I can totally understand. I am here to listen.

Leslie Speakman

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JUNEGIRL2's Photo JUNEGIRL2 SparkPoints: (64,587)
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2/5/12 11:52 A

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What's bothering me right now is people not understanding how difficult my life can be at times. they make it sound like if I just tell Dwayne to smarten up that magically he would be able to look after himself, deal with a the little bumps in his day etc. OMG if it was that easy, I would have done it years ago.They don't realize that going out, etc requires prep so it is successful and one little thing can change the whole day. I know I am luckier than alot of parents with a child with autism as Dwayne has some coping skills but we still struggle with stuff. I think part of it is most of my coworkers and recently empty nesters and enjoying the freedom and think I should be the same way.
I know it is their problem but I feel I can't talk about my life in fear of being judged.

You'll notice I changes the team logo. If you would like your child's photo as a logo let me know. We can rotate them!

Karen

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LESLIESPEAKMAN's Photo LESLIESPEAKMAN SparkPoints: (2,119)
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1/13/12 12:37 P

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I completely understand.

Leslie Speakman

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ANDILH Posts: 1,243
1/13/12 9:32 A

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A person doesn't and shouldn't have to know a person's entire medical history to show another person compassion. I'm not asking them to care for her, or to do anything for me. I just get so tired of parents telling their children to "stay away because it might be catching". I've actually had adults say things like that! The children all approach and ask "why is she sitting down?" A totally appropriate question and one I never mind answering for a curious child. But I get so irritated by the ignorant adults. I know some people have never been exposed to disabilities, but they are a reality and something that has to be dealt with now.

LESLIESPEAKMAN's Photo LESLIESPEAKMAN SparkPoints: (2,119)
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1/12/12 11:24 A

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Sometimes for me it takes a little bit of letting them know how it is hurting me and educating them on how they should be. Most of the time they do not know how to react and they are scared of a lawsuit. They are also most of the time very dumbfounded until they are educated.

Leslie Speakman

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JUNEGIRL2's Photo JUNEGIRL2 SparkPoints: (64,587)
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1/12/12 8:22 A

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ANDILH- I have a friend who adopted a child with FAS and she has told me some things even professionals have said to her and they have been very hurtful. As soon as they find out she isn't the biological Mom their attitudes change. I can only imagine how hurtful that is to your Mom.

I had a school staff member be very uncaring towards Dwayne in terms of his seizures and the pressure it caused me until she learned that he never had seizures until after he joined our family. Then she was all nicey nice. Not sure why that should make a difference but people sure can be funny.

I hope people will someday gain an understanding of diseases and disabilities and learn some tolerance.

Kare

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ANDILH Posts: 1,243
1/11/12 11:05 P

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It drives me absolutely nuts when people assume that my mom did something wrong when she was pregnant with my sister. My sister is severely multiply impaired, has seizures, and a feeding tube. She has TSC which is a genetically inherited trait or it is a genetic mutation that has no environmental cause.

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7/26/11 6:05 P

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You know people are well meaning but sometimes they can make our lives very difficult. My hubby's family constantly give Dwayne things after I say no. He always wants to colour but they dont realize that if I don't limit him it's a 24/7 thing. I'm not being a beeotch, I am just trying to keep my sanity and not have to deal with meltdowns. They say "ohh what can it hurt?". If they only truly understood.

Kare

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7/26/11 3:35 P

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Sunday my girls were outside and my oldest one (the one with epilepsy) started to fall asleep on the front porch. Well our neighbors decided to take her to their house and let her watch tv while their son took a nap. My daughter is 11 years old! The first reason why she was outside was because we don't want her to be watching tv the whole entire summer. We want her to go out and play or read.

Leslie Speakman

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6/27/11 12:00 P

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Isn' t that the truth? My sister in law thinks all that's wrong with Dwayne is bad parenting. Not by her brother of course, but by me. If we didn't give in, he would learn. By giving in she means that when he lets us know that he needs to leave(overstimulated) and we leave within a half hour before he has a meltdown. She has no idea about the needs of an autistic child and how fortunate we are that he can let us know when it is enough.

I can still remember when we adopted our boy and we live in a small community. I took the kids to McDonald's one evening and a neighbour loudly announced "Those are the people that adopted that poor little blind baby!" I was so embarassed I didn't even know what to say.

Karen

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6/27/11 3:33 A

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The thing that makes me angry when people have to stare and then they stick their noses in by saying, all he needs is a good smack and that he is so naughty, omg these people have no idea. emoticon

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4/8/11 7:49 A

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It's been my experience that most people with aspergers present very normal but have alot of problems with the social part of life. I know of students with aspergers that are excellant students and go onto university and good payong careers.

My son has Pervasive Developmental disorder which is also on the Austism Spectrum. He talks non stop but has alot of problems with changes in routine. He is very focused on a few favorite subjects and he doesn't realize that the rest of us aren't interested which causes the problems with social skills. His emotions seem flat to other people but people that know him well can read him well. His speech has improved in the last few years (he's 15) but he still functions below his age. He can read and type braille at a grade 3 level and is continuing to gain skills.

Every once in awhile we have a moment, day where his real spirit is revealed and it is such a delight. Gives us a chance to see what he would be like without autism in his life.

We saw a neurodevelopmental pediatrician to get out diagnosis. The school kept saying he was developmentally delayed and we were saying can't be because the delay wasn't across the board. The Dr was a godsend and we continue to see her now that she is a psychiatrist.

I hope you can get your girl tested. The label doesn't change who she is but it gives you a place to start looking for the proer help for her.

Karen

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LESLIESPEAKMAN's Photo LESLIESPEAKMAN SparkPoints: (2,119)
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4/6/11 1:12 P

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I'm looking to see if my daughter has asburger syndrome. I think she does but it is a total arguement because she can talk somewhat; however for her age she isn't speaking like an 11 year old. She talks more like a 9 year old and she is short and has epilepsy. She isn't normal and I'd like to see if there is something I can look for and help her. Any ideas?


Thanks!


Edited by: LESLIESPEAKMAN at: 4/7/2011 (11:00)
Leslie Speakman

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CHRISSIE49 Posts: 44
3/3/09 11:15 A

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Take oneday at a time.
emoticon

Spending time with my kids is the best to get involved.

check out my website

www.freetimeplay.com


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JENNIFER8005's Photo JENNIFER8005 SparkPoints: (0)
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2/23/09 11:47 A

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the stage that he is going in for has been post ponded for a year actually. We got lucky it's just now it's real and going to happen again.

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ZCHRISMAN's Photo ZCHRISMAN SparkPoints: (14,538)
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2/22/09 6:28 P

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Welcome back Jennifer! Were you expecting the next stage to come now? Keep us posted on how things are going!

~Zelma~
Someone I love has Cystic Fibrosis.
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2/6/09 11:43 A

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Hi everyone
I know it has been some time since i have been on. And I am sorry for that, i will be more with it again now.
Things just have been very up in the air and backwards too lately.

I am so glad that more of you have found this chat room. For I wanted a group were mothers of kids with special needs could just sit and talk and find comfort in the world.

I actually just found out my son will be going back in for the next stage of his heart reconsturction this March.

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1/6/09 11:51 P

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Hi everyone! I just found this group and am glad I did. I too have a child w/ CF. I was starting to wonder if I was the only one on SP that has a CWCF. Kenzie is 3 and we only found out this past April about it. I am so blessed to finally have a diagnosis but also because God was taking such good care of her until we were ready to take on the task. We've not been given a # for her calorie intake; just high fat/high calorie. I look forward to meeting you all!

Oh yeah, this summer we took the girls to SDC and Kenzie was just one inch too short to ride the kiddie rides and she just screamed and threw such a fit as she was the only other child besides her sister wanting to ride. It just broke my heart b/c my niece which is 7 months younger than Kenz was tall enough to ride. We are so ready for next summer since she is now 36.5 inches!!

~Zelma~
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12/22/08 4:01 P

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My son has cystic fibrosis. This is a terminal illness & affects all of his organs except his kidneys & brain. The body produces too much mucus in the organs so they don't always function properly. The obvious/outward effects are small stature/short & skinny which is due to poor absorption of food, & the obvious coughing that's nonstop. What bothers me is the fact that this 8-yr-old is on a 2400/day calorie plan while I, myself, am on a 1700/day calorie plan. It's hard to see him eating all of the stuff that I WANT to eat, but can't/shouldn't. I know it's what's best for him & I'll continue to do what I have to do to care for him as best I can. Do you have any thoughts/ideas/tricks for helping me thru these times? He has to eat 6-8 times/day, so it's pretty constant.

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8/18/08 7:24 P

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That's really cool. Just remember that she will have to get use to the mean people in the world, as a parent we would like to hide them from all of them but that doesn't work eighter.

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AODELL7521's Photo AODELL7521 Posts: 251
8/15/08 4:50 P

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My 10 yr old daughter has JRA and her hands look really bad and knotty because of it. The kids in her school can be very cruel, so I take her to places wher she can hang with other kids who understand her!!

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7/27/08 12:04 P

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Don't worry about the school, that is just how they were trained, and don't see the other things going on around them.

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7/27/08 10:58 A

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What bothers me is that because my child has "special needs" she is treated differently. Also that her school is on my case all the time about her weight, however, I was told by her teacher that she is the only kid who always brought fruit or veg as her snack, and not crap.

Crystal B



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4/22/08 7:21 P

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What bothers you, is there more to life than what meets the eye? Is there something you just found out that's kind of not so good? Or is your weight loss just not going as well as you would have liked?

Let's talk

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3/2/08 7:21 P

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Well first welcome.

My 12 year old step son has asperger's as well. And on the not that people look at you when your child is babbling and not talking yet.

My son is 2 1/2 and has a speach delay. And then to add to it when he is walking through the store people think he is only about a year or maybe 15 months.

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3/1/08 4:04 P

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My son is extremely short for his age and it does sometimes bother me that people mistake him for being much younger than he is. My biggest pet peeves are people who mimick his speech delay. They coo and aww and tell him how cute his "baby gibberish" is because they assume he is just a little kid learning to talk. They don't even treat him like a real person. Also, kids his age can't understand him so they ignore him and don't want to play with him. His speech is slowly improving but sometimes it is hard to watch his difficulties. I am unsure how much it really bothers him BUT it bothers me.

Also, my son has Asperger's so he is really prone to "temper tantrums" and other "extreme behaviors". If he has issues in a public place I often get looks or comments from other people who assume I am just a bad parent who can't control my kid ..... I refuse to medicate him though so I will just have to find a way to deal with the scrutiny of others.

}:{ ~ Marci ~ }:{
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1/16/08 1:54 P

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Is it the looks that people give you? Is it the way people ask you questions?

For me it is people that think my son is younger than he really is, because he is on the small side.
But if you see me I am not super tall, infact i am short, and my husband is only ave. for a man. So of cource he is not going to be huge.

It truly bits when people think your lieing about your childs own age.

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